A

Acute pain
In hemophilia, pain which is caused by acute bleeding and not by a chronic joint disease such as arthritis.

Adrenaline
The hormone released when your body experiences stress. Adrenaline causes a boost in energy.

Antifibrinolytic agents
Drugs that help hold a clot in place once it has formed by stopping the activity of an enzyme, called plasmin, which dissolves blood clots

Arthritis
Inflammation of the joint. In addition to inflammation of the synovial lining, there is also damage to the cartilage and bones of the joint surfaces. In hemophilia, arthritis is caused by repeated bleeding into the joint cavity.

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B

Bethesda assay
A test to measure the level of a clotting inhibitor once it is known to be present. The results of the test are given in Bethesda Units (BU).

Blood clotting
The process of forming a permanent clot to repair a damaged blood vessel. It includes four steps: vasoconstriction, platelet plug formation, and coagulation.

Budget
A plan that outlines the amount and the way you are going to spend money.

Bursary
A monetary award that does not have to be repaid. It is given to individuals who have financial need.

Bypassing therapy
A treatment for patients with inhibitors. The factor concentrate that is infused contains clotting factors that work around the inhibitor.

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C

Chronic pain
In hemophilia, pain due to damaged tissues and/or altered brain and spinal cord functions and not an acute bleed.

Clotting cascade
The chain reaction that happens inside our blood to help stop a bleed. When a blood vessel wall breaks, tiny plasma proteins called clotting factors, link together to form a chain. This chain is called fibrin. Fibrin form around the platelets, which together ‘plug’ the bleed.

Complementary and alternative medicines (CAM)
Health care systems, practices, and products that are not a part of conventional medicine.

Comprehensive Care Team (CCT)
The group of health care professionals (doctors, nurses, physiotherapists, and social workers) who work together to help you manage your hemophilia.

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D

Diuretic
A substance that causes your body to expel more water than it needs to.

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E

Enamel
The protective coating on your teeth. Enamel cannot be regenerated once it is destroyed, so it is important to take care of your teeth to keep your enamel strong.

Endorphin
A hormone released in the body that improves one's mood

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F

Factor replacement therapy
The treatment in which clotting factors are infused into the bloodstream of a person with hemophilia to replace those that are missing. It temporarily corrects the coagulation disorder.

Fibrin
The material making up the clot that forms in the last stage of the clotting process.

Fresh frozen plasma
A component of whole blood that was used for treatment of hemophilia in the 1950s and 1960s

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G

Gene
Tiny structures of DNA that determine such things as the colour of a person's eyes. Hemophilia is caused by an abnormal gene on the sex chromosome.

Genetic mutation
The specific mistake in the gene.

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H

Hematuria
Blood in the urine, caused by bleeding in the kidneys.

Hemoglobin
A substance in the red cells of blood, responsible for carrying oxygen.

Hemophilia A
A genetic disorder characterized by frequent bleeding into joints, muscles and tissues. The prolonged bleeding is caused by low levels of factor VIII (factor 8).

Hepatitis C
A viral disease that causes liver damage, which usually takes many years to develop. It is transmitted by the exchange of contaminated needles. In very rare cases it can still be transmitted by fresh blood components.

High-titer inhibitor
An inhibitor that is measured at more than 5 Bethesda Units. The antibodies of a person with a high-titer inhibitor are stronger and destroy the factor concentrate more quickly.

Home therapy
The care of the person with hemophilia at home, rather than in hospital. This includes the administration of clotting factor concentrates by the person with hemophilia or by a family member.

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I

Iliopsoas
Muscles located deep in the hips.

Immune tolerance therapy (ITT)
In ITT, high doses of the missing factor concentrates are infused. This is done three to seven times per week for very long periods of time (months or years). The therapy allows the body’s defenses to get used to the foreign factor and to stop making antibodies against it. This way, normal doses will be effective in stopping bleeding.

In Case of Emergency (ICE)
Store all your emergency contact numbers in an entry called ICE: In Case of Emergency. Many times, emergency personnel or hospital staff does not know who to call if a patient has a cell phone. Similar to 911, ICE is becoming a nationally recognized name.

Inhibitor
An antibody that the body produces that recognizes infused clotting factor as foreign and prevents it from being effective/working properly.

Inhibitors
Some people living with hemophilia produce a specific type of antibody, called inhibitors. They eliminate factor VIII or IX or other clotting factor proteins.

Intramuscular Injection
A vaccine that is injected deep into a muscle, usually in the upper-arm.

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J

Joint
A joint is the place where two bones come together, allowing movement such as bending, rotating and swinging back and forth.

Joint capsule
The joint space and the tissue membrane that forms a "sleeve" around the joint together form the joint capsule.

Joint disease
These diseases in hemophilia are caused by repeated bleeding into joints. They are most common in knees, ankles and elbows.

Joint replacement
The complete replacement of the joint cavity with synthetic materials. The joints most commonly replaced are the knee and the hip. However, the operations cannot be performed on young people as the materials used to replace the joint wear out.

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K

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L

Low-titer inhibitor
An inhibitor that is measured at less than 5 Bethesda Units.

M

Module
A single section of the program. Each module includes information, videos, and animations about a topic. You will complete one module each week.

Muscle bleed
Bleeding into a muscle, which can be caused by a single serious trauma or small but repetitive trauma. A muscle bleed can happen if a muscle is strained or stretched too much.

MyHealth Passport
A wallet-sized card that includes all of your relevant health information. A health passport is an efficient way to communicate the details of your hemophilia to new health care providers.

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N

Non-steroidal anti-inflammatories (NSAIDS)
Medicines that are commonly prescribed for pain. However, NSAIDS interfere with hemophilia. When looking for medicines to treat pain, avoid taking NSAIDS.

Nutrition Facts Table
A label found on packaged food products that tells you the nutritional value in one serving (such as fats, carbohydrates, calories, sodium, and cholesterol).

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O

On-demand therapy
The care of the person with hemophilia at home, rather than in hospital. This includes the administration of clotting factor concentrates by the person with hemophilia or by a family member.

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P

Personal Health Coach
A trained member of the research team working on the Hemophilia Transition Study. The coach calls you once a week to discuss your progress, logs, and any difficulties or questions you may have during the program.

Physiotherapy
The use of exercise to stay fit or rehabilitate weakened muscles and damaged joints.

Plasma-derived factor
Factor that is collected from a large group of human blood donors.

Post-Secondary Education
The level of schooling that follows high school. University, college, and trade school are all forms of post-secondary education.

Port-a-cath
A central venous access device that is surgically implanted just under the skin. It allows easier infusion of clotting factor concentrates if access to the veins is more difficult.

Prerequisite
A requirement one must fulfill.

Prophylaxis
Regular infusions of clotting factor concentrates, usually two to three times a week. This is done in order to prevent bleeding episodes from happening.

Psoas
The muscles located on both sides of your lower spine. The psoas extends through your pelvic area to your hip joint, allowing you to freely move your hips.

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Q

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R

Radioactive synovectomy
An operation to shrink the synovium in a joint. A radioactive chemical is injected into the joint. The swollen synovium dies and is eventually replaced by a healthy one.

Release of Medical Records
A form that gives health care workers from other institutions access to a patient's medical records.

Recombinant factor
Clotting factor that scientists and engineers make artificially inside a laboratory; cells that produce factor are grown inside a controlled environment in the lab.

R.I.I.C.E
An acronym that stands for Rest, Ice and Immobilization, Compression, and Elevation. These are the steps you can follow in case you have an injury that causes a bleed.

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S

Scholarship
A monetary award typically given to individuals who present high academic or athletic achievements or who have made a contribution in the community.

Self-infusion
A person living with hemophilia injects himself with clotting factor. This process is called self-infusion. This is done intravenously using a syringe and butterfly needle.

S.M.A.R.T.
The acronym that helps us set productive goals: specific, measurable, achievable, realistic, and time-appropriate.

Standardized Test
A test administered by the government or school system that is used to evaluate students of the same grade level in a fair manner.

Stress
The physical and emotional response of your body to pressure.

Stressors
Situations or demands that cause pressure.

Surgical synovectomy
An operation to remove the synovium in a joint. It is used when more extensive joint damage with cartilage erosion makes an arthroscopic synovectomy impractical. The surgeon makes an incision in the joint to remove the synovium and smooth any rough spots on the bones themselves. This operation is also called an open synovectomy.

Synovial membrane
Also called the synovium. It is a layer of special cells that line the capsule of the joint.

Synovitis
A type of joint disease caused by repeated bleeding into the joint cavity. The synovial membrane, in an attempt to remove old blood and debris from the joint, grows new blood vessels and becomes thicker and prone to repeated bleeding.

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T

Three-Sentence Health Summary
An easy way to discuss important health information with your health-care team.

Transition
The process of becoming self-sufficient and learning to manage your hemophilia on your own. Transition may involve moving from a children's hospital or treatment centre to adult care.

Tuition
A fee charged by post-secondary schools that covers the cost of the courses a student enrolls in as well as maintenance of facilities and services.

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U

Ultrasound
An imaging technique that uses sound waves to take pictures of the inside of your body. These pictures give your doctor information about the size, shape, and texture of the body part being scanned.

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V

Vaccination
Medicines that are injected, usually into the muscle, to help protect you from serious infections and diseases.

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W

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X

X-ray
A type of radiation that passes through the body. It's a quick way for your doctor to visualize the internal structures of your body.

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Y

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Z

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Looking Ahead

// Looking Ahead

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In the previous module, you learned about a major life transition you will make in you hemophilia care: switching from paediatric-centred care to adult-centred care. But as a young person living with hemophilia, you will encounter many other life changes that go beyond this transition. You may be deciding to attend post-secondary school, or start a new job. You will meet new friends throughout the various transitions in your life. You may choose to confide in your new friends about your bleeding disorder.

In the final module, you will learn how hemophilia plays a role in all of these natural life transitions, as well as tips for when you go travelling and hemophilia resources you may find helpful in the future.